Journal article

End of life care in CF: Patients, families and staff experiences and unmet needs

Maxine Braithwaite, Jennifer Philip, Heidi Tranberg, Felicity Finlayson, Michelle Gold, Tom Kotsimbos, John Wilson

Journal of Cystic Fibrosis | ELSEVIER SCIENCE BV | Published : 2011

Abstract

UNLABELLED: Palliative care is not well understood in CF. Unmet needs of patients with CF, their families and staff were explored. METHOD: Focus groups and interviews with forty-two participants (12 patients, 10 family members and 20 staff) were conducted at a university teaching hospital. RESULTS: Thematic analysis identified six themes. Knowledge: Patients and families felt their knowledge of palliative care was limited. Psychological frame: Hope and a positive psychological frame was essential to coping, however, this was a hindrance to the acquisition of information. Denial as a coping strategy resulted in a lack of preparation for declining health. Treating team: High expectations were ..

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Grants

Awarded by Alfred Ethics Committee


Funding Acknowledgements

All authors declare that the answer to the questions on your competing interest form are all No and therefore have nothing to declare. Ethics approval was granted from the Alfred Ethics Committee project number 88/06.This project received funding from a research grant from the Australian Cystic Fibrosis Research Trust.